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LOOK News and Events:

‘News’

“I just want the best for my daughter” Sue Costen

Meet Sue Costen, mum of 14-year-old Alice. Sue talks about Alice being diagnosed with Usher Syndrome and how getting in touch with LOOK provided Sue with vital emotional support.

When was Alice diagnosed with Usher syndrome?

‘Alice was born profoundly deaf. Just over a year ago, during a routine eye test at Specsavers, the ophthalmologist detected problems with her vision. Suspecting she had retinitis pigmentosa (RP), Alice was referred to great Ormond Street hospital. After doing some eye tests and about 4 months after going to Specsavers, the consultants told us that they suspect Alice has type one Usher syndrome, which affects both hearing loss and sight loss. The doctors are waiting for genetic confirmation, but they are pretty sure it is. At first, I thought Alice was afraid of the dark because of her hearing impairment. In the last three years it got really bad at night time. She would grab hold of me and shake and say, ‘I need the light, I can’t see anything’ I now feel really bad, because I was like ‘There’s nothing wrong with you, stop it, you’re just trying my patience and of course then the problems with her vision made sense when we got the diagnosis.

What has it been like for Alice and you since the diagnosis?

It’s been an uphill battle. It took me a long time to stop blaming myself for Alice’s hearing impairment. I was convinced it was my fault and we’d just got through that, and then, bang this happened.
After her diagnosis, the eye condition progressed rapidly. Within months she had gone from sight impaired to severely sight impaired. It took me over a year to accept that I could apply for more Disability Allowance money, due to her visual impairment, even though the social workers were telling me she was entitled to it. Once I made the decision, I completed the form and I attached 47 additional pages and to the front I attached a cover note in the size 18 font that Alice reads. I asked them, prior to reading the application, to put on glasses I’d attached that simulate RP and go about their daily tasks. 6 weeks later, I got a response saying Alice had got the additional funding. I truly do believe that the covering note and the glasses made that difference.

School has been a challenge as well. It’s only recently that her school have acknowledged that Alice has a severe visual impairment. Up till then, because she’s in a mainstream school with a visual impairment unit, she only had the support of one TA who has to work with three students. As it transpired, when she returned for the new year last September, she was with a different group of students so now works with a TA one-to-one the majority of the time. I’ve also had to argue to get Alice’s work adapted into an accessible format. We’ve had an excellent visual impairment team working with us and they’ve been really good at fighting her corner.

Did you receive any further support after Alice’s diagnosis?

At Great Ormond Street I spoke to a lady called Paula Thomas, who gave me some information about RP and told me about LOOK. I got in touch, and they’ve been fantastic. In the early stages, I was in email contact and on the phone with Charlotte the director of LOOK and Megan LOOK’s mentor coordinator almost daily. I even spoke to Charlotte’s mum to get a parent’s perspective. It was very helpful to talk to people who could understand what I was going through. Whilst this is about Alice, this does also affect me mentally and emotionally, because as a parent I just want the best for my daughter. It’s been a tough road and I wouldn’t wish it on anyone. Alice’s visual impairment has also affected all of the family. Alice’s little sister is 8 and she knew about Alice’s ears being broken, but she can’t get her head around the fact that her eyes are broken too. But She’s little and in time she’ll learn.

When you got in touch with LOOK, Alice joined the mentoring scheme. How did she find taking part?

When Alice was a mentee, we went for a weekend visit to the Royal National College for the blind (RNC) where LOOK have their offices. We got to meet Charlotte and Megan and Alice met her mentor Kirsty. Listening to Charlotte talking to Alice about her own experiences of losing her vision and them agreeing with each other, I was actually feeling, ‘someone understands.’

On the Saturday we went to the college itself and she clicked with a young lad straight away. They were attached to the hip for the whole of the weekend. On the Sunday she then told me ‘Mum I want to come here. I don’t feel different, I feel normal.”

What does Alice want to study at college?

Alice is an amazing artist. She wants to study art at RNC and she also wants to do IT and audio media. The next hurdle will be securing funding for RNC, but I will get whatever reports are needed and do what ever has to be done so she can go.

What would you say to other parents who are in a similar position to you?

There is support out there and charities like LOOK can offer help. Also, I’m more than happy to talk to other parents, because I don’t want others to go through what I’ve been through.

I’ve also learned to pick my battles to make sure that Alice has as stress free a time as possible while she prepares to take her GCSES. I now take a step back because I’ve realised organisations are there to support and I don’t have to always do everything.

If you would like to find out more about the support we offer parents and families email us at info@look-uk.org, or call 01432376314.

You can also visit our mentoring page, to find out more about our free scheme for visually impaired young people.

‘It was crazy being on the stage at Wembley’

Harriet is one of our amazing mentors. Last month, she won our competition to see Arcade Fire perform at Wembley. She blogs about what it was like to get a touch tour of the Wembley stage and she shares how the experience has got her thinking about a career in the music industry.

I’ve always been a great fan of festivals and concerts. I attended Glastonbury in 2016 and saw artists such as Rag’n’Bone Man, Glass Animals, alt-J – I could go on. I’m already planning to go to “Rize” – this summer and am especially excited to see Bastille for the first time! Music is important to me as I’m hearing impaired too but can stream music through my hearing aid, and I think because of my lack of sight, it’s a whole new sense. It’s so nice having the escape after a bad day of just closing my eyes and switching off. Seeing Arcade Fire especially was so special because I’m struggling with A-levels at the minute and really wanted to do something nice.

‘Getting to the venue was hectic’

My mum and I spent the majority of the time rushing across the unknown abyss of North West London and panicked that we’d ended up in the wrong place, only to turn around and see the arena right next to the hill we’d just spent 15 minutes trying to defeat! My heart is beating right now just thinking about it.

‘It was a crazy experience actually being on the stage’

When we finally arrived, we met up with my cousins and Megan, the mentor co-ordinator for LOOK. We were given a tour of the stage from Arcade Fire’s very own tour manager! It was a crazy experience actually being on the stage – it felt so small: the instruments were so close together that I thought I’d knock something over or fall off the stage. We were also shown all the visual graphics and lighting, and this really enhanced the experience as I’d never quite appreciated the extent of work or artistry that went into each song. The technicians were literally performers themselves as they could play every light in time with the beat. The tour manager must have really been studying the night before as he knew all the ins-and-outs of every aspect of the arena, from the equipment to staff. But to have a job like that – following the band to every venue, talking to fans, enthusing about music – must be fantastic!

‘the floor literally shakes with every bass beat’

The music itself, I can’t even begin to describe. Seeing a live show is totally different to listening to it on your phone – the floor literally shakes with every bass beat, everyone around you loves the same music, and all around you – dad-dancing…imagine! I obviously didn’t know every single word to Arcade Fire’s many songs, but even so – it couldn’t stop anyone from enjoying the atmosphere.

‘I’ve always wanted to do something creative’

I have been so inspired by this one experience – it’s given me more insight into things I never knew before, and I’ve even started looking into a future career maybe in the music industry. I’ve always wanted to do something creative and this really opened my eyes to the extent of opportunities out there, and how perhaps any challenges instigated by my sight loss can be worked around. So, despite my partial sight, I don’t let it stop me – if you are visually impaired yourself, don’t feel discouraged. Just because you may be registered “disabled” it doesn’t ever mean you should feel you can’t enjoy things that other people do. At the end of the day, enjoy what you do have! When opportunities present themselves to you, take them. I’m not a fan of corny stuff and I’m cringing slightly now but I honestly believe music is a means of communication – it uncovers things that we may miss in everyday life, and I think it brings people together. Don’t allow any lack of confidence to stop you from enjoying things! If anything, challenge any doubts you or your peers might have and prove yourself to be resilient and determined.

World Book Day: Finding out more about audiobooks

Today is #WorldBookDay, a day all about celebrating books and reading.
For many visually impaired people, one form of accessing books, is via audiobooks, also known as talking books. These are books that are read out by a narrator and are usually recorded.
Sam Obigbesan, our project Assistant, blogs about the history of audiobooks and how the internet has changed the way we listen to audiobooks today.

Talking books, as their alternately known, have been in existence for over 70 years. To begin with, those recordings of books, poems and plays were mainly aimed at the visually impaired and print disabled population.
They gained more popularity since the 1970’s when cassettes were introduced. This meant that books did not have to be abridged when recorded. This meant that more people could have access to them.
Though there were recording companies that soled recorded books on tapes for commercial use, such as Brilliance audio, Chiver’s and Clipper audiobooks; those organisations were mainly for profit. Charities such as Librivox in the US and Calibre audio library in the UK, provided people that were not able to read print for one reason or the other with audiobooks that could either be sent via post or through online streaming.
Public libraries had at their disposal a number of titles that had enjoyed some commercial success. Providing readers an alternative to purchasing the CD’s which could cost quite a bit, as both the recording process and the distribution was costly.
That changed with the introduction of online downloads. The costs of distributions dropped by at least 40% and the sales of hardware for instance CD’s and cassettes dropped at least by half. Online sales, with Audable; an Amazon Company, increased, occupying 50% of the sales in the entire audiobook industry.
Those are the cold facts, but what about the human related element?

Why do people listen to audiobooks?

For visually impaired people, audiobooks provide a way to access print titles. Additionally, people also listen to audiobooks while driving, or while doing house work and some listen when they want to go to sleep.

Get more involved with #WorldBookDay

RNIB and Guide Dogs are providing the £1 World Book Day books in braille, audio and large print. To find out more, visit the World Book Day website.

Getting Great at the Everyday: Confidence & Wellbeing weekend

Sign up to join LOOK staff and mentors for a fun weekend of activities designed to boost confidence, resilience and wellbeing.

We have a team of superb blind and partially sighted mentors, and Independent life skills experts on hand to inform, entertain and support you.
Like all LOOK weekends, it’s an opportunity to relax and meet new friends, while sharing our experiences of life with sight loss.
Workshops include:

Confidence in the Kitchen – improve your cooking skills

Outdoor games to boost mobility

Forest school fun

Self esteem boosting workshops

Q&A with LOOK mentors

Daily tech solutions – come and learn about the apps that have changed so many lives

Who can come?

Young blind and partially sighted people aged 11+ can come with a parent/guardian.

How much does it cost?

The full cost of the event is £60, £30.00 each for a young person and their parent. We will require £40 deposit per family (1 parent 1 young person) to secure your place on the weekend.
– Bursary places are available for those who qualify for free school meals. Those who qualify for a bursary place should contact us directly.

How can I book my place?

Places are going fast. Book today by emailing info@look-uk.org or calling 01432 376314.

LOOK-UK mentors win national award

On Wednesday 5th July, we attended the Brightside Trust Mentoring awards and thoroughly enjoyed the evening.

Some of LOOK’s mentors and mentees were shortlisted for two awards; mentee of the year and mentoring pair of the year.

We are delighted to inform you that Danielle and Jack won mentoring pair of the year! They were presented with a certificate and engraved trophy. This is a big achievement for LOOK and our mentors and mentees as our mentoring project is still in its pilot year.

A huge thank you to the Brightside Trust for the nomination and for such a wonderful evening.

Have a listen to the audio below which is of Danielle and Jack winning their award.

Celebrations at LOOK-UK as mentors are nominated for national award

Still in its pilot year, LOOK-UK’s mentors are making it an awards season, as some have been nominated for a national award. This is thrilling news for our mentors and mentees, whose names are up for the Brightside Trust Mentoring Award.

The Brightside Trust mentoring awards celebrate the inspiring stories of mentors and mentees nationwide. It works with over 9,000 mentees and 4,000 mentors across 60 projects, and has received 130 nominations for awards. A fantastic achievement for LOOK’s mentors. Winning mentors and mentees will be presented with a certificate and engraved trophy on the night. And the dress code is smart but not black tie

LOOK is delighted their efforts have been recognised. Of the nominees, Harriet has been shortlisted for the mentee of the year award, and Danielle and Jack have been shortlisted for mentoring pair of the year. You can find more information on the awards here. You can check out the shortlist for the awards here. A huge thank you to Brightside Trust for this nomination and well done to our mentors and mentees. We wish them the best of luck.

Have a listen to the audio below, recorded by our Mentoring Coordinator, Megan Barker who discusses why these fantastic individuals and partnerships have been nominated for a Brightside Trust Mentoring Award.